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« Small Pleasures | Main | Shunt Shmunt »

August 13, 2009

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Will keep saying prayers till Charlie is home in your arms for good. Keep your courage up -- as you say, this is another step toward getting him to that point. Bought Kendall's book for my daughter, who is very much like her, and am reading it myself & loving it.

Danny, I've been reading your blog for some time and I've been close to tears reading of the difficult times you've had with Charlie and of course the sad passing of your son Oliver. I am so hopeful that Charlie will be improving every day so that you will be able to take him home soon. He is such a beautiful baby. Of course being a huge Wilco fan I also enjoy the posts about Jeff and your sister. The videos you have posted have been great.

You are very inspiring and a great writer. My very best to you and your wife and your daughter. My prayers are with you all. God bless.

I have all of you in my prayers nightly.
G-d Bless!

I got to your blog several months ago through irrelevant links, and now I check every few days for news of Charlie. I think of you all often.

i am keeping your boy in my thoughts.

Thinking of you and sweet Charlie. Before you know it this will all be a memory and you'll be bouncing your baby boy at home! Your strength shines through in your writing... it is very inspiring to read. I'm hoping for a brighter day for you all tomorrow.

Positive thoughts and prayers for Charlie? Most definitely!! I'm glad the surgery itself is behind Charlie now, and I hope his recover will be smooth, fast and complete. G-d bless your adorable little boy.

So glad that the surgery went well. It must be so hard to see Charlie intubated and with all those hateful IVs back in. I felt like every bit of equipment that was no longer required was such a triumph, I hated seeing them come back time and time again. I had a complete meltdown when a young, inexperienced and probably nervous doctor informed me that Jessica might have to be reintubated following her vaccinations. And that was just at the thought of having that damnable ventilator back. It took her so long to get rid of it. My heart goes out to you and Kendall.

We also ended up in the same bay that we started off in, metres away from where Georgina lived and died. Initially they couldn't move us fast enough but I guess my ol' Queen of The Hill was there so long that which bay she started off in, and which bay her sister died in, were lost in the mists of NICU time.

I am so glad that you had the presence of mind to take Oliver over to see Charlie. I am so glad that they had that moment together. I only wish I had done the same, it upsets me beyond measure that I never asked to do so.

Hope that Charlie makes his way out of his drug induced haze and that you are soon bouncing him on your lap. Thinking of you and your family, especially your sweet boys. Positive thoughts and prayers to Charlie. Remembering Oliver.

Thanks for the update. Your family remains in the thoughts of everyone here. I'm sure this is another great step on Charlie's road to recover and his journey home.

Prayers of blessed memory for Oliver and good health and recovery for Charlie continue. For you and Kendall, strength.

xoxo
Fake Grandma

Keep us posted - glad to hear the surgery went well. I read a short story by Sherman Alexie that made me think of Charlie, called War Dances, in a recent New Yorker. I don't know how much of it is autobiographical but I suspect most of it is - he (in the story) had hydrocephalus as a child, with multiple shunt surgeries and scarring. The story made me cry and laugh out loud - a good dose of gravity and levity...

I only started reading this blog regularly about three weeks ago, and am now so into it that I get a little worried on the days you don't post. Then, on the days you do post, I hold my breath until I get to that first humorous aside. At that point I don't laugh so much as let out a sigh of relief.

Wishing Charlie, and your whole family, a speedy recovery.

I also hope you are able to bounce him on your lap soon. Sweet boy... my thoughts are with him (and you too!)

Always thinking of you guys,

I'm thinking of all of you. I hope things go smoothly.

I am so sorry that you are going through all of this. I will say a prayer for Charlie and for Oliver. I can't imagine all that you are going through right now.
I found out about this blog through a twitter link. I too blog (duh) mostly about family humor, but I too am a parent who has buried baby. My heart goes out to you and your wife and I am sorry for the pain and struggle that you are going through. I hope all the best for Charlie and his fighting spirit. I know that Oliver is willing brother to survive and thrive.

That picture of the surgery made me cry. I can't believe how much Charlie has had to go through so far in his short life. I can't imagine how hard this is for you and Kendall to watch.

He is so precious. I hope that all of this pain, and all the precarious ups & downs will result in a life that is richly blessed.

Much love & many prayers,
Jane

Danny, I am so sorry you and your wife and your son(s) have had to go through all of this. I am here hoping for a positive outcome for young Charlie.

Neil brought me here. I'm blessed to know you. I'm lifting you and Charlie in prayer!

God, only by Your mercy and grace are we healed. Be with little Charlie as he is a living testimony to your power and strength.

Danny,
The illustration of the surgery really helps me understand what Charlie went through and marvel that such a tiny being could have such a major operation. I'm happy the procedure was successful but sad for you and Kendall that Charlie has to be hooked up again. I'm sending positive thoughts as always and hoping for a quick recovery.

Love,
Julie

Many prayers going up for Charlie. I hope he's doing better today and is one step closer to coming home for good.

xoxo
Lori

I have been reading your blog for a short time. I have a five year old daughter who has a VP shunt. She had a grade 3 intraventricular hemorrage when she was 6 weeks old. She was a full term, healthy baby (up until that point). Like you, we were told many things when this happened - brain damage, learning disabilities, other possible developmental problems, etc. My daughter is a happy, normally developed 5 year old looking forward to going to kindergarten in a few weeks. The only "problem" my husband and I notice (that no one else probably would) is that she has very poor balance. It takes her a little longer to get across the balance beam at gymnastics. Not a big deal! I'm telling you this because I know that when you hear all of the things that could possibly go wrong you don't hear the things that could possibly go right! I know that we are extremely fortunate that things have turned out the way they have for our daughter. She has had three shunt revisions, two within the first year. The third was a little over two years ago. She bounces right back. Her shunt was placed about three weeks after the bleed. Up until that point every day was a roller coaster. Once the shunt was in place and she recovered from surgery life got much easier for her. I pray that the same is true for Charlie.

Praying for Charlie, waiting for news.

Dear Danny,

The next time I have a medical question, I'm calling you (or Kendall). It's too bad that you had to learn all this information at the expense of Charlie, but I hope one day you will all look back at this stressful time and remember all the "ups" and forget the "downs".

Don't forget to keep singing; do you know "The Bluebird of Happiness"? It's corny, but sweet and uplifting and I know Charlie loves to hear you and Leah sing.

Love,
Marilyn

My sister-in-law's sister had a little girl 3 months early. She is now 10 years old, very bright, very bratty, very cute and healthy. We are keeping you in our thoughts. GO CHARLIE!!!!

I'm a new reader and just wanted to say that baby Charlie is in my thoughts and prayers. Stay strong, dad and mom.

Danny
Sending you and Kendall and Charlie all the prayers and best thoughts in the world. You are so very brave.

Bouncing him on your new will feel sooooo good!

I hope he comes home soon.

My boy had surgery when he was a year old, and when I turned him over to the surgeons, every fiber of my being revolted against the thought of someone cutting the precious body I'd fought so hard to nurture and protect. I can only imagine the pain you must feel for your fragile boy who has endured so much. The diagram of the surgery makes my stomach clutch, but it also represents closure and freedom, the last hurdle Charlie must overcome to go home to his family.

Danny,
Glad to hear Charlie made it through the surgery, and I am hoping he has a speedy recovery. The diagram was great, it really helped me to understand the procedure - and your description was very impressive too :o) We are all thinking of you, holding our breath for news, cheering when is is good, and looking very forward to the day you write that you are taking Charlie home.

We're continuing to pray for Charlie and "Mr. and Mrs. Miller" [my sons]. I just read today's post, the boys are in bed but I'll share the new concerns in the morning. We call it a "breath prayer" when someone is on your mind and you think healing, loving, prayerful thoughts on their behalf. We will heavily pepper our day with breath prayers for Charlie tomorrow [and days following].

You and Mrs. Miller take care of yourselves.

Ending my day with thoughts of sweet Charlie...

"Crossing California". Awesome book. Takes you right back to the old 'hood, doesn't it.

I've had more operations than I can count. I've woken up on morphine drips after several of them. "Tripping on morphine" is an excellent way of describing it. You ride on this floating cloud as it forges its way through your veins. You're there but you're not there. You're aware of everything that's going on around you but it's like being in a dream land. Sometimes you don't know what's real but it's comforting to have people around who love you. Talking to Charlie when he's off in morphine land is the right thing to do. I know. I've been there. I can relate.

I'm still on oral morphine daily. It's a different ride than IV morphine but it's a ride nevertheless. You want to be surrounded by people you love and trust.

Charlie knows you are there. Keep talking, Danny.

See you soon. I hope I get to meet my little hero.

Hugs & love to all of you.

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